Psychometric evaluation of the pittsburgh sleep quality index

Correspondence: Mark Tuthill Department of Medical Oncology, Hammersmith Hospital, imperial College National Health Service Trust, Ducane Rd, London, w12 0HS, UK Tel +44 208 383 1000 Fax +44 207 6039679 email marktuthill@doctors.org.uk Abstract: More than 25,000 hematopoietic stem cell transplantations (HSCTs) are performed each year for the treatment of lymphoma, leukemia, immune-deficiency illnesses, congenital metabolic defects, hemoglobinopathies, and myelodysplastic and myeloproliferative syndromes. Before transplantation, patients receive intensive myeloablative chemoradiotherapy followed by stem cell “rescue.” Autologous HSCT is performed using the patient’s own hematopoietic stem cells, which are harvested before transplantation and reinfused after myeloablation. Allogeneic HSCT uses human leukocyte antigen (HLA)-matched stem cells derived from a donor. Survival after allogeneic transplantation depends on donor–recipient matching, the graft-versus-host response, and the development of a graft versus leukemia effect. This article reviews the biology of stem cells, clinical efficacy of HSCT, transplantation procedures, and potential complications.

Hematopoietic stem-cell transplantation.

Chronic graft-versus-host disease.

The number of long-term cancer survivors (> or =5 years after diagnosis) in the U.S. continues to rise, with more than 10 million Americans now living with a history of cancer. Along with such growth has come increasing attention to the continued health problems and needs of this population. Many cancer survivors return to normal functioning after the completion of treatment and are able to live relatively symptom-free lives. However, cancer and its treatment can also result in a wide range of physical and psychological problems that do not recede with time. Some of these problems emerge during or after cancer treatment and persist in a chronic, long-term manner. Other problems may not appear until months or even years later. Regardless of when they present, long-term and late effects of cancer can have a negative effect on cancer survivors' quality of life. This article describes the physical and psychological long-term and late effects among adult survivors of pediatric and adult cancers. The focus is on the prevalence and correlates of long-term and late effects as well as the associated deficits in physical and emotional functioning. In addition, the emergence of public health initiatives and large-scale research activities that address the issues of long-term cancer survivorship are discussed. Although additional research is needed to fully understand and document the long-term and late effects of cancer, important lessons can be learned from existing knowledge. Increased awareness of these issues is a key component in the development of follow-up care plans that may allow for adequate surveillance, prevention, and the management of long-term and late effects of cancer.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/cncr.23448

Physical and psychological long-term and late effects of cancer

The ability to cure increasing numbers of individuals for malignant and non-malignant diseases with the use of stem cell transplantation has resulted in a growing number of long-term survivors with unique medical issues. Chronic graft versus host disease (GvHD) continues to be a significant problem in the allogeneic stem cell transplant setting and, as we continue to use alternative stem cell sources and attempt to modulate the immune system to increase an anti-tumour effect, we will probably see rising numbers of patients with this complication. The capacity to treat this problem and improve both the immediate quality of life as well as long-term effects is imperative and requires the ability of haematologists/oncologists to identify chronic GvHD and its multi-organ system presentations. We describe the risk factors for developing chronic GvHD, its presentation and the current treatment options for both initial therapy and secondary treatment.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1365-2141.2004.04945.x

Chronic graft versus host disease.

Questionnaires assessing a range of quality of life (QOL) outcomes were completed by 200 adult bone marrow transplant (BMT) recipients from five BMT treatment centres. Respondents had undergone allogeneic (46%) or autologous BMT (54%) for a haematological malignancy and were disease free and at least 12 months post BMT (mean 43 months). Variability in post-BMT QOL was reported with deficits in physical, sexual and occupational functioning particularly likely. Allogeneic recipients reported poorer QOL than autologous recipients. Greater age at BMT, lower level of education and more advanced disease at BMT were consistent risk factors for poorer QOL. Contrary to previous research, evidence for improved functional status with the passage of time post BMT was obtained. Factors generally not associated with post-BMT QOL included disease diagnosis, dose of total body irradiation, presence of chronic graft-versus-host disease (GVHD), type of GVHD prophylaxis and extent of marrow graft match. In conclusion, while many BMT recipients reported normal QOL, the majority indicated that their QOL was compromised relative to premorbid status. Prospective, longitudinal research will be necessary to further identify risk factors for poor post-BMT QOL and identify the temporal trajectory of post-BMT QOL.

Quality of life following bone marrow transplantation: findings from a multicentre study.

The psychosocial impact of bone marrow transplantation (BMT) was investigated in 172 disease-free adult BMT survivors drawn from five different BMT treatment centers Respondents were a mean of 435 months after BMT Both questionnaire and interview assessments were utilized Survivors' perceptions of whether they had 'returned to normal' following BMT, recollections of pre-BMT expectations for returning to normal and current psychological distress were assessed The results indicated that only a minority of respondents considered themselves to have 'returned to normal' following BMT Reports of less than normal physical, cognitive, occupational, sexual and/or interpersonal functioning were common In contrast, few patients reported pre-BMT expectations for such Discordance between pre-BMT expectations for returning to normal and current functional status was associated with greater current psychological distress Finally, despite the presence of any functional deficits and despite any discordance between pre-BMT expectations and current functional status, survivors' evaluations of their decision to pursue BMT were generally quite positive Results are discussed in terms of their implications for: (1) the process of obtaining informed consent for BMT, and (2) clinical strategies for enhancing post-BMT psychological adjustment

'Returning to normal' following bone marrow transplantation: Outcomes, expectations and informed consent

While problems with sleep and energy level (ie fatigue) are commonly reported during recovery from bone marrow transplantation (BMT), little in-depth information regarding these two problem areas in BMT patients is available. Using both questionnaire and telephone interview methods, information regarding current sleep and energy level problems was obtained from 172 adult BMT survivors drawn from five different BMT treatment centers. Respondents were a mean of 43.5 months post-BMT at the time of the initial assessment. Similar questionnaire data was obtained from 137 respondents (80%) at a follow-up assessment 18 months after the initial assessment. Results suggested that half to two-thirds of disease-free BMT recipients experience problems with regard to current energy level or sleep quality. While for the majority of patients these problems were rated as mild, 15-20% of BMT recipients showed moderate to severe problems in these areas with corresponding decrements in quality of life. Furthermore, both cross-sectional and longitudinal analyses suggested that problems in these areas did not simply abate with time. Only low to moderate correlations were obtained between indices of sleep and energy problems and measures of anxious and depressed mood. Finally, the presence of current sleep problems was associated with older age at BMT, receipt of TBI during pre-BMT conditioning, and female gender. Further research needs to address the specific etiology of chronic problems with sleep and energy level in BMT recipients as well as evaluate biobehavioral strategies for managing these problems.

C. B. Greiner

Papers

Quality of life following bone marrow transplantation: findings from a multicentre study.

'Returning to normal' following bone marrow transplantation: Outcomes, expectations and informed consent

Energy level and sleep quality following bone marrow transplantation

Quality oflife following bonemarrow transplantation: findings froma multicentre study